Wednesday, December 30, 2009

Our "Lucky" Unlucky day

We were feeling pretty good when we went to sleep last night. We were taught how to put the NG tube in and it wasn't as bad we thought. Before we went to bed she drank 23 CCs of the 50 CCs she was given of milk. Her previous record was 10CCs. We were really excited! Shortly after feeding time her heart began to race again. We were almost near 200 bpm. She was lying very calm and still in my arms, but heart was racing and her head had began to sweat. We couldn't get the nurse to do much. She suggested we give her loratab. As much as I hate her to have these drugs I knew that loratab would calm her. We were desperate and agreed. This morning we woke up and waited for the Cardiologists to do their rounds. Her heart began to race. For the first time she exceeded 200 bpm. The nurse came in and said she was going to give her loratab. I wasn't comfortable with the idea. My aunt, who has a sick grandson, told me on Christmas Eve that I wasn't here to make friends with the nurses. That all I needed to worry about is that Gracelyn is being taken care of properly. She told me that Heavenly Father would make Jeff and I aware of her needs and that our instinct would kick in. I trust my aunt 100% and decided that I needed to listen to her council and I told the nurse that I didn't want her to have the loratab. In the mean time Jeff overheard the doctors outside saying that we were going to be discharged. Finally they came in to look at her and her heart was at 209. I told them she had been that way for 20 minutes. The cardiologist looked at me and said she wasn't comfortable with her going home the way she was and the look on my face had to have already said it, but I mouthed to her that I wasn't either. I told her that the same thing had happened the past few days and that it was just being treated with pain killers. She went out and told our nurse she wasn't to give her pain killers, that we needed to figure out what was wrong. I was not happy with the idea of staying, but I knew we couldn't take her home the way she was. Something was wrong. The doctors went out to the desk to talk and her heart continued to race. The nurse kept silencing her alarms. When the cardiologist got up to leave she glanced at the screen and saw that she was at 219. Not to long after it was in the 230's. Within a few minutes we had 10 people in her room working on her. One of the first things they did was get an ice pack. I was told that I would want to leave and I did. Jeff stayed, he watched as they placed the ice pack over her entire face to try to stop her heart for a beat and get her pattern back to normal. I could hear her screaming from so far away and then it stopped. I hated it! Finally Jeff came to find me and let me know they were done. What they were trying to do didn't work. They ordered an EKG and began to study it. They gave her a drug to slow her heart down and it worked instantly. The gave her some fluids thinking that the racing heart may be due to her being dehydrated. It helped some. They ended up giving her some loratab because after studying everything they felt it could be due to pain. Yesterday Jeff suggested to me that they give her scheduled Tylenol to control the pain so that we don't have to go through the pain getting so bad. This was the idea they also came up with today. That seemed to help and she remained in the 160's. They wanted her to be above 180 for 2 hours. She did that. I felt comfortable that it WAS just pain. During this time she drank 1/2 a bottle again. We were are so happy to see her progressing. Shortly after one of the cardiologist came up to talk. The look on his face said it all. I knew something was wrong. He came in to tell us that one of the doctors on his team had been studying her EKG and he diagnosed her with AET (Atrial Ectopic Tachycardia). Her heart basically sends two signals instead of one. We were told that this is rare. With this little baby's heart it was no surprise. They could possibly fix it through a cath, but at this point she is too small. Maybe when she is older. They have put her on a beta blocker called propranolol. They decided to try her on a half dose and see how she did. She did great! She is getting ready to receive her third dose. She has been in the 140's the entire evening. They want to monitor her for a few days on the beta blocker and then we can go home. She will be given this drug three times a day, possibly for the rest of her life. We are so disappointed to know something else is wrong with her heart, but we are so lucky to have found this before we got home and she went into heart failure. I have been very nervous about leaving the hospital, but it finally feels okay to take her home.
(After getting rid of everything yesterday, Gracelyn was hooked back up to more machines and IVs.)

Tuesday, December 29, 2009

A Peaceful Day...


Today has been the complete opposite of yesterday. Baby Girl slept so peacefully through the night (which meant so did Jeff and I). She has had a great day. She hasn't been given any pain medication since 2:00am.

Whenever we would go in for prenatal visits and have ultrasounds she would have her hands up by her face. I have been surprised that she hasn't done it since she was born.Today when we woke up she had her hands up around her face and hasn't moved them all day. Our nurse thinks that she is finally at a happy comfortable state.
She passed her car seat test. In fact, we left her in for an hour after she was done because she was doing so well.
We went down stairs for her echo and everything looks okay. I just tried to feed her and she showed no interest at all. Our nurse thinks it may keep us from going home tomorrow. However, she was sedated during the echo and that could be affecting her desire to do anything. She is finally free of everything but what she will be going home with. Her picc line was just taken out. Jeff and I have to learn to put the NG tube in tonight and then we will have passed all the "tests" to go home. Now we just need to get her eating and us comfortable enough to take her home with us.

Monday, December 28, 2009

Ding...Ding...Ding...Ding...DING!...DING!..DING!

We have heard the alarms go off on her machine ALL day. She hasn't had a very good day. She didn't sleep very well and around 1:00 this afternoon her heart rate began to race. By 4:00 she was up near 200 beats per minute. They want her around 150-160. We had a really hard time getting her to calm down. I began to stress and I could tell the nurse began to stress. He was on the phone with our nurse practitioner quite a few times trying to figure out what needed to be done. You could tell something was upsetting her. It was hard to know what it was since we were trying a few new things with her. We continued to try and feed her by bottle, but she still isn't too interested. They taught us to gavage (?) feed her, which is what we will be doing at home. Every other feeding we will try to bottle feed and what she doesn't eat will be given to her through her NG tube. We have to put it in a syringe and let gravity move it into her belly. This way is much quicker than she is used to receiving it through the machine. We were worried it was upsetting her belly, but after a few times she was doing just fine. So, we knew it wasn't her feedings. The nurse finally gave her some tylenol, but she still wouldn't calm down. Finally it was time for nurse changes and our new nurse (which we had last night and loved) came in and said, "it is time to start eliminating things, let's get her something for pain." I hate her being given narcotics, but clearly something was wrong. 15 minutes later she calmed down and has been fine ever since. We still have a few more things we need to get passed off before we can go home, but didn't accomplish much with her having such a rough day today. She did, however, pass her hearing test today. Yeah!

Jeff and I both passed off CPR and what to do if she is choking with our nurse.

She went up and down on her oxygen all day again. The pain had to do with this. Jeff and I had to give her her medications and feedings today to show the nurses we could do it once we were at home. We still have the car seat test and we have to be taught how to replace the NG tube should it come out. She is scheduled for a sedated echo tomorrow at 2:00pm which means we won't be taking her home until at least Wednesday, depending on how she does tonight and the rest of tomorrow. We are wanting to get home, but really feel she needs to be stable and comfortable before we leave the hospital.

Sunday, December 27, 2009

Waiting to go home...

We haven't really had much happen today. She has lost more water. She is down to 7 pounds. Still of few more ounces to go. Most of the lines that she is attached to now are just sensors. She has been up and down on her oxygen all day. Right now she is on .05 liters, next to nothing, but she is needing it. She has been wanting to eat all day. Anything that comes near her mouth she has gone after. Finally at 6:00pm I was given the chance to try and feed her. The nurse laughed at my family as we all stood over her waiting to see if she would eat so that her tube could be taken out. She said "It's too bad I don't have a camera, I would have loved to catch a picture of this." With my family, there is never a shortage of cameras. She had her choice of three.
She took about 10 of the 30 CCs of milk and decided she was done. The rest was given to her through her NG tube. Since it wears these heart babies out so much they will only let her try to eat by mouth every other time. We will try again at 10:30. Camee's daily visits finally paid off. Her and Jared were able to hold Gracelyn. We will update tomorrow. Hopefully with news that we will be going home.

Saturday, December 26, 2009

Out of the CICU!!

This morning we were told that Gracelyn is doing so well that she is ready to be moved out of the CICU. She has had a good majority of her lines taken out. She is left with her picc line, her feeding tube, one IV in her foot and she is on a small amount of oxygen. They have tried to get her off of the oxygen, but her sats drop. She didn't want to eat for the nurse last night (I think it was him not her. First thing he said is that he likes working with big people better.) so that have her on a continuous feeding. Tomorrow they are going to give me the chance to try and feed her again and possibly nurse. We have had an amazing nurse today that has explained things I have been trying to learn over the last 4 months in a way I have never been able to understand before. She looks beautiful! When they weighed he this morning she was down to 7 pounds 1 ounce. She has lost so much water. Her face isn't red and swollen, her eyes aren't as puffy and she has kept them open quite a bit for us. She got her first bath and they washed her hair. Jeff is being a big baby hog. He has been holding her for the last 3 hours. I can't get him to give her up. :)
It looks like if she keeps things up she will be coming home as soon as Monday, if not Tuesday. Depending on how she does she may be coming home with oxygen and the feeding tube.

Friday, December 25, 2009

Merry Christmas!

Jeff and I decided that we needed to make Christmas as normal as we could for Mr. C. He has been such a good boy through all of this. We felt like while she was one on one with the nurse and still in the CICU being monitored so closely that we were okay to leave.

Jeff and Mr. C spent Christmas Eve making cookies and writing a letter to Santa. Mr. C was so excited in the morning to see if santa had left anything. He told us he had been a good boy, and he has been such a good boy! He was really excited to see that he got his Transformers and spinning toothbrush just like he had asked for. When he comes down to the hospital he has been playing with dinosaurs that they have in the waiting room, so he received some dinosaurs from his sister to play with while he is at home. He likes getting our camera out and taking pictures, so Jeff and I gave him a little digital camera of his own. People have been bringing gifts by our hospital rooms for Gracelyn so we let him open all of those as well.

After we left our house we went to Grandpa and Grandma Hales' house to open more gifts. He opened a bunch of clothes for his little sister and him and then he opened up his toys. He got some new playdoh, a Toy Story memory game, building blocks and a big boy bike. He was so excited! Aunt Camee and Kurtis gave him a playdoh alphabet set that he can stamp letters out of the playdoh.

After that we all came down to visit baby sister. She was looking good, but still really red and swollen. The nurse said she still had about 7 oz. of water in her. When they weighed her in the morning she was at 7 pounds 4 ounces. She had more of her lines taken out and they said she should be moved out of the CICU in the morning. The lines that were taken out were keeping us from being able to hold her. The nurse asked if I would like to have a great Christmas present and be able to hold her. I was so excited to have her in my arms again!
We ended up with several great "Christmas presents." The wonderful charge nurse, Tracy, let Mr. C come back in again. He brought his Christmas present in that he picked out for her and opened it for her.
She has had a feeding tube in, but they decided that she was doing well enough with food in her belly that we could try to bottle feed her. I was able to do that for the first time. She choked a bit, but did quite well. They will feed her every three hours and up the amount every six hours.
Jeff, Cole and I left the hospital to go to Brian and Cami's to spend some time with Jeff's family. Grandpa and Grandma kept an eye on her while we were gone. Uncle Jared also came down to visit for a bit.
We had a good time getting together with Jeff's family. We were able to google chat with Jeff parents while we opened all the presents. They are missed during this time, but we know that they are where they should be.

We hope everyone had a great Christmas! This is such a special time of year and though it has been hard to be away from family and friends we are very grateful for all that we have. We are so grateful for our special Christmas baby. We are grateful for her and the fight that she has in her to be okay and healthy. We are grateful for the blessings that she has already been given in her short time here. We are grateful to have such a wonderful little boy who has had to be without mom and dad for so long. He is a huge blessing in our lives. We couldn't ask any more of him that he has given. We are especially thankful to have such great family to be able to help out as we have needed so much help these past 10 days. We could not make it without our family. We are grateful for all of the prayers that have been offered on our behalf. We know so many of those prayers have been answered. We are grateful for our Savior and his birth.

Merry Christmas!


Thursday, December 24, 2009

Hotel Mini Van

Jeff came up with a "dood idea," as Mr. C would put it. He decided to take all of the chairs out of our van and put the cheap little mattress that we took out of our trailer in. I laughed at the idea at first, but have loved having it in there. We have been able to go out and take a nap when we are exhausted. The other night after surgery neither of us could leave the hospital. We had a place at the Ronald McDonald house, there are closets with beds in the PICU, a cousin offered his house and Kurtis has a friend that has a house a couple blocks away that we have stayed at. Somehow the van seemed like the best idea. Our nurse told us that she worried about us all night. We slept so good and stayed so warm. Mr. C has been begging to sleep in it now too. My boys have plans of having a sleep over in Hotel Mini Van once we get home from our hospital stay.

Recovering & a Visit from Paul Cardall & Gracie's Dad

Today has been an amazing day. You can see the blessings being fulfilled in her life. Everyone that has had the chance to either bless her or to pray for her has prayed that her recovery will be quick with no pain to our little girl. As the nurse said yesterday she is still doing "stellar."

Around 12:30 pm she had her breathing tube taken out, she has been trying to get it out since right after the surgery. Her oxygen is at 1/2 a liter, which is almost nothing. She is going to get winged off of the oxygen hopefully tonight.

They are taking lines out one after another. Today they took out her central line (IV in the neck) because she is doing so good. She has also had a feeding tube put in so she can start receiving food, finally after a week and a day of being born she finally gets to eat something.
Tomorrow they are planning on taking out her right atrial lines (two wires attached directly to the heart to monitor it). The only thing left to take out is going to be the drain lines from her surgery and her pick line.

Paul Cardall stopped by the hospital today with the dad of a little girl also named Gracie, who passed away last year from a congenital heart defect, bringing blankets to the families that are going to be here for Christmas. They also left us with a book and Paul's Christmas CD. We had been told that Paul had stayed in the same room that Gracelyn is in. He referred to it as the "miracle room." Gracie's dad said that she also stayed in the same room and witnessed miracles as well.
Those of you that don't know who he is you can read his blog athttp://mytricuspidatresia.blogspot.com/. He is an amazing man who has had several heart surgeries and was not suppose to live more than a couple of days after he was born. With the faith of his parent and now his faith he is a walking miracle that has inspired my life and the life that our little girl will have. Paul posted on his blog the other day a scripture that I am now going to take into my life and grow on it.

Psalms 147:3 reads “He healeth the broken in heart, and bindeth up their wounds.”

We also had a few other special visitors from our ward stop by, Dave and Rose Bell. If there is anyone we want praying for our little girl it would be Rose. :) She has so much faith! She is a great example to us all!

I want to thank everyone that has had our little miracle in their thoughts and prayers. I know because of your faith that the Lord is blessing my family and will bless yours.

Lets have a great Christmas and remember our blessings.

--Jeff--

Wednesday, December 23, 2009

Recovering from surgery...

Our nurses have been telling us how amazing Gracelyn is doing. The nurse she had when she came back to the CICU to recover kept saying that she is doing "stellar." It was so great to hear! The nurse tonight thought she had been here recovering from surgery for three days. She is breathing on her own, her color is great, she is sucking on the tube down her throat and most recently she's been trying to pull the lines out of her body. The nurse decided she needed to tape them down and put mittens on her hands so she didn't rip anything out. Plans are to take the tube out of her throat in the morning. They feel like she is ready now, but don't want to chance having to put it back in if something goes wrong. The attending told our nurse he felt like she would be moved out of the CICU by Saturday and then possibly home 3-4 days later. For having had our baby go through heart surgery today, Jeff and I are both doing amazing! We loved having the chance to have our babies meet and having surgery go so well has been such a blessing. Here is one last picture before we head to bed.

Out of surgery

It has been seven hours since we sent our baby girl to get her little heart fixed. We were just taken back to see her for the first time. She has tubes coming out of everywhere.
She is hooked up to at least ten machines. Finally, one of those machines doesn't include the prostaglandin drug. We are so happy to have her off of it. I was finally able to rub her little arms and legs, even though she has no idea we are there, it made me feel better. She is intubated right now and will be for the next two days. Her incision is about five inches long. Fortunately, the doctor was able to close her it before he brought her to back to recover. Typically when they have to use the bypass machine the babies become swollen making it hard for them to close the incision site immediately. She only needed to be on the machine for 20 minutes. The surgeon was pleased with that. I hard a real hard time being told that they would be going through her chest. This wasn't part of the plan. Finally Jeff helped me to realize that in one of her blessings she was told that the doctors would "be wise in their decisions." We had to trust him. Had he gone through her side, she would have ended up being cut down her chest as well because she needed to be put on the by pass machine. I am grateful for a husband that honors the priesthood and has faith in it and the Lord. She has a tube that is draining out of chest and the nurse is very happy with what that is doing. She is doing very well with the shunt. The surgeon gave us what was left over of it. It is a small, soft and flexible tube, made of gortex. It is hard to believe that this little tube is what's keeping our baby alive.
Everything about her looks great. Right now she is already trying to breath on her own. She is definitely a fighter! They have moved us into another room by our selves. She will stay in this room for 3-5 days and I'm having a hard time believing it, but the nurse thinks it will only be another 3-4 days after that until we are taking her home. Hopefully she will be coming off of some of these machines later this evening.


Surgery update

Gracelyn has been in surgery for about 5 hours now. They originally told us that it would only be three hours. The surgeon thought that he would be able to perform the surgery without putting her on the lung and heart bypass machine. Once he was ready to put the shunt in her saturations started to drop so for safe measures he had to put her on the machine, I only hope that her recovery is just as quick as not having to put her on it.
We just received a phone call from the surgeon and our little miracle is doing good and he is done with the shunt and now he is putting in a few last post-op lines in to help with the drainage and then Gracelyn will be going back to her room for a couple of weeks.
--Jeff--

Mr. C's special Christmas Present


My very persistent husband's efforts finally paid off. Jeff has asked EVERY single nurse since we have been here if Mr. C could see his sister. Last night he finally found the right nurse who decided she would ask the charge nurse if it would be possible for Mr. C to see his sister before surgery. We finally got a YES! They told us we could bring him back to her room at 7:00 this morning. We put a mask on him, shut our curtains and he was able to spend about 25 minutes with her. He loved it! He has an amazing bond with this little girl. Two nights ago I showed him a picture of her and he grabbed my camera kissed her face. He then looked at me, poked his bottom lip out and tears streamed down his face. He told me, "mom, I LOVE my baby sister!" He knew she was coming before we told him. One prayer he thanked Heavenly Father for his baby sister. He had no idea that I was even pregnant at that point. I have spent the last nine months with him attached to my belly kissing it and talking to her. A week and a half ago he told us that she would come in four days. That fourth day I began strong contractions and she was born the following morning. He has had a such a hard time understanding why he can't meet her. I am grateful to Jeff for making this meeting happen so much sooner that we had thought.
One last look at our baby girl before they fix her broken heart. We will keep things updated as the day progresses.

Special visitors and an "uneventful " day

Monday when we arrived at the hospital we found some special visitors. Jeff made arrangements for his brother Brian to bring his Grandpa and Grandma Sanders down. Jeff felt like he needed his grandpa to give Gracelyn a blessing. Jeff's grandpa is the one the sealed Jeff and I when we were married and he and grandma Sanders mean a lot to the both of us. It was a great priveledge to have him lay his hands on her tiny head and bless her.
In the words of the nurse it was an "uneventful" evening and day. Surgery didn't happen. They told us Tuesday and now it looks like it could be as late as Wednesday. She is perfectly safe in the state that she is in and there are other cases that have come before her that are an emergency. We are both frustrated, but part of us feel like there is a chance that things can change between now and then. There is nothing we can do to change the situation and can only pray that this is the way things were intended to be. She is doing very well. She continued to open her eyes and cry today. She was very responsive to us both. We had a wonderful nurse today. She gave Gracelyn a pacifier and she LOVED it.
I think at this point she will take anything you put in her mouth. She has got to be so hungry. The nurse would wrap her up like a burrito, nice and tight, she was so comfy the whole day. The nurse also scrubbed her hair for the first time since she was born. Her hair isn't only black, but it is black and curly. My sweet friend Celeste brought us a wonderful care package and baby gifts which included some darling bows. The nurse put one of them in for me. It is red with snowflakes and a cute little snowman in the middle. I am begining to like this girly stuff! When we went down to dinner a family who had a child there last year left a bunch of gifts for us. We decided Mr. C could open them for Christmas for her. Every day is overwhelming there. You can't walk by the front door without watching people drop off donations and gifts for the children. As we were walking out we were met by Jeff's cousins wife, Giselle who brought us a cute teddy bear and bracelet. We hope to have another uneventful evening and get some answers tomorrow. We left a little early tonight since we had been there since 8 a.m. We told Cole we could go home and watch a movie together tonight and left grandpa and grandma to have some alone time with their new grandbaby. We left her in good hands.

Tuesday, December 22, 2009

Surgery scheduled for Wednesday at 7:30 a.m.

Today has been another quiet day. I have had the chance to just hold her all day with Jeff by our side. It has been a nice, much needed day, especially now that we know that she will for sure be the first (and only) case tomorrow. All of the emergency cases have been taken care of and now it is time to fix our little broken heart. We finally had the chance to sit down and meet with the surgeon. He has been in other cases all week. We had some questions finally answered. Tomorrow Gracelyn will receive her BT shut. It will allow her heart to work on it's own without the prostaglandin drug. She will immediatly be taken off of it. We had been told that they would be going in her side for the surgery, but the surgeon has decided that it will be best to go through the chest. It was really hard to hear. We planned on a little incision on our tiny newborn and instead she will come out of surgery with her chest having been opened. He doesn't plan on doing bypass, but wants to be prepared in case he needs to. This is what he needs to do to be prepared. We have to trust him. The BT shut is just a tempory fix. It will allow her to be taken off of the drug and be taken home to have a chance to grow. The BT shunt will only las 4-6 months at our altitude and at that time she will have another shunt called the Glen shunt. They will give her body some time to declare itself and decide what it wants to do. The surgeon has told us to plan on them rerouting her heart in the future so that she has a single ventricle heart. We pray that this won't have to be and that through time her heart will heal and this won't be neccesary. Today Gracelyn was able to meet Papa and Grandma Cheryl over the internet.
She wouldn't open her eyes, but she could hear them. We also had another great friend visit and bring us chocolate. Thanks Kathryn!
We appreciate all the prayers and pray that they may continue as tomorrow will be the roughest day yet.

Sunday, December 20, 2009

Our move to the CICU



Today was such a great day for Jeff and I. When we got to the hospital this morning we found out that Gracelyn was being moved to the Cardiac Intensive Care Unit. Initially this made me very uptight. Although she is doing great, I felt like it was a moved needed because something was wrong. The nurses explained that the Cardiologist like their patients there, that they wanted to get to know us and her situation before surgery seeing that that is where she will go to afterwords. They took her down at 1:00 p.m. Around 2:30 we finally got settled. I could hear the doctor talking and she was questioning why she was on morphine and wanted her off of it. Once the doctor left the nurse explained to use that she was not going to be given any more morphine or versed (a drug that was making he comfortable). She said in this unit we give our babies Tylenol to control pain. It made me so happy to hear this. Just last night I told Jeff I was very uncomfortable with her having the morphine, but had we knew we had to trust the nurses. They keep explaining the pain that she is in. That it is like bad cramps or if you have the flu bad. I couldn't help but think, when we have the flu or cramps, we wouldn't take such strong drugs. We didn't have a choice but to trust them. The CICU nurse told me they don't like to keep their babies that "asleep." They expect that her blood pressure will start to come up since she won't be on those drugs which also act as respiratory suppressants. What a relief! We began talking to the nurse and we explained that we hadn't see her open he eyes since she was born. The nurse grabbed some q-tips and pried her little eyes open. From that moment on she kept trying to open them. My parents showed up with Mr. C and Jeff went out to be with him. I went to pump and left my parents to see her. Around 7:00 I came back from pumping, I started talking to her and the next thing I knew she had began to open her eyes. Grandma happened to have her camera on her filming. My mom ran to grab Jeff and she kept them open long enough for him to see her. This is what we saw...
video

It made my day. I really do have a baby in there. Before we left we also saw her moving her arms around and crying like babies are supposed to do. They expect her to do great again tonight. They are still calling her a low maintenance baby. We love to hear that. All of her levels are looking great and she seems to have healed fine from Fridays procedure.
Jeff and I want to again thank you for all of the emails, calls and posts on the blog expressing your love and support. We appreciate all of the prayers being said for us and her and know that it is all that can heal her.

Gracelyn's Delivery and Our Stay and the University Hospital

I have been very overwhelmed today by the things that I have been able to do over the last few days. Had I had my c-section I would just be being released this morning. Instead, I was able to be wheeled over with my baby as she transferred hospitals (instead of laying on the operating table), the following day I walked over to Primary's 3 times by myself, once really by myself in the middle of the night. Yesterday I walked the mall to take Mr. C to see Santa. I have been able to hold BOTH of my babies. I have overwhelming feelings of gratitude to my Heavenly Father for this huge blessing. I see it as nothing other that a blessing, something Heavenly Father knew I need to make this difficult time easier. It has been such a difficult decision not to have the c-section. I have stirred over it for months. I am very grateful to a team of doctors that made my VBAC successful. I have been seeing a team of perinatalogists over the last few months, not knowing if one of them or another doctor at the U would deliver our baby. The first time I met Doctor Draper at McKay Dee I knew he was the one I wanted. We created great relationships with other Doctors, but I felt something different about Dr. Draper. When we got to the hospital and found out the I really was in labor (after 6 days of awful contractions) the first question I asked was who the doctor was. No one knew who was on for that evening. We got in our room and finally the nurses told me that Dr. Draper was on until 7:00 the next morning. I wanted to cry. I knew I had a doctor that was confident in what he was doing and suddenly I became confident in what I was doing. He came to visit and told me he felt like all was going to go as planned. As the night progressed my body did all it was supposed to perfectly. Finally I got to a 9 and my contractions became to strong and too close together, the babies heart rate dropped. Immediately I was surround by several doctors and a team of ten trying to work on it. They decided they need to give me some medications to slow the contractions down. It worked. They gave me 2 hours to rest. I fell asleep for a bit with a nurse by my side not taking her eyes off of the babies heart rate. Next thing I knew I had a doctor in there telling me it was time to try. We began to push and she told me I had to stop. She said you are having this baby now and Dr. Draper said he wanted to make sure he was here with you. They went to wake him up and once he came in we pushed through 4 contractions and ten minutes later we had a baby. I was never given any drugs to advance labor, I had a team of patient doctors that knew exactly what they needed to do. I will forever be grateful to them. A nurse stood next to Doctor Draper with warm blankets. They let Jeff cut the cord and immediately handed Grace to the nurse all I got was a glimpse of black hair. They passed her through the window and we waited for them to stabilize her. Two minutes later a camera was passed through the window and they handed it to me. It had nearly 20 pictures of our new baby girl. They took pictures of her for us since we were unable to. I am so grateful to them to allow us to have record of that special moment. As the doctors were cleaning things up they told me that they never would have guessed that was my first time and that so many women would love to have such an easy delivery. If we have any more children I will do all I can to have my baby at the University Hospital. Everything was PERFECT! The nurses and doctors were amazing, all the staff was great, the food was not hospital food, it was so good. I loved it! I couldn't have asked for a better experience in delivering a baby.

Santa Visits

Saturday Jeff and I decided we needed to spend some time with Mr. C. Before I had the baby we had been promising him that we would take him to go and see Santa so that he could tell him what he wanted for Christmas. Well Gracelyn beat him to it. Santa came to the NICU to visit the babies there. We showed him the picture and Jeff thought that it was important for us to make sure he saw Santa too. We took him to the mall and couldn't find Santa anywhere. We decided to go to the food court so that we could have lunch together, then found a Christmas train and let him ride around in that, finally we found a sign saying Santa had moved to a new spot. When we got there the gates had closed and Santa wouldn't be back for a few hours. Jeff and I knew we couldn't wait to get a few hours to get back to the hospital. Well, no surprise, but Grandma worked he magic and the next thing you know Mr. C was sitting on Santa's lap. When Santa asked him what he wanted he told him he wanted some Transformers and...a spinning toothbrush. Santa looked at me like, "is he serious?", but that is what he has been asking for. He said something about his baby sister and Santa questioned him, "You want a baby sister?" I explained to him that he had a new one she was just in the hospital sick. Before we left he grabbed my arm and said I have a feeling to tell you all will be well. If I could count the times that has been said to me. I have had countless people tell me that they don't know if they should say it, but that they know all will be okay. We had a great morning together! We both miss our little guy SO much and needed some time just with him.

Saturday, December 19, 2009

Good and Bad News

After coming out of surgery yesterday, Jeff and Andee met with the doctor who did it. She wasn't intubated and the doctor said he saw Grace open her eyes afterward. The procedure went well, they were able to get through her pulmonary valve and enlarge it with the balloon. They fixed what they needed to. To get to the pulmonary valve they went through the tricuspid valve. When they were going through the tricuspid, they discovered that it has a very small opening. This is something that wasn't discovered before. So it was good and bad news. The pulmonary valve is good now and has a stent in it, but unfortunately her tricuspid valve is not working properly. So her diagnosis is now Pulmonary valve artresia, severe tricuspid stenosis and ____ hypoplasia. After coming out of surgery, Grace did very well at first. However, she is still on the prostiglandin and they needed to increase that dose. They have had problems getting a pulse in her right leg (where the procedure was done) and it has turned dark purple. They have given her aspirin and blood thinners to prevent any blood clots. During the night Gracelyn stopped breathing three times and had to be resuscitated three times, bless her heart. This was caused from the increased dose of medication that is keeping her alive and the morphine they have been giving her. She is not doing very well at the moment and will have surgery either today, Sunday or Monday to put a shunt into her little heart. To do the shunt they plan to go in through her side, possibly her chest to reach her heart. We are thankful that the procedure yesterday went well, and are lucky that this problem with her triscupid valve was discovered. Everything has gone so well with her, and we can only continue to pray that her next surgery will go as well.

- Camee

Friday, December 18, 2009

Waiting for Grace

Jeff, Andee and Gracelyn right before her surgery


Gracelyn happy in her mom's arms


Sweet Baby Grace... she looks just like her big brother.
You can see the new IV that was put into her little head today.

Gracelyn went in for her surgery about 1.5 hours ago. It is supposed to take 2-3 hours to complete. The nurse who took her in just wanted to hold her instead of taking her in, as does Andee. She is very content when she is being held tight and does better than when she's laying there on her own. When Andee and Jeff were with her today, she was responsive to their voices. The cardiologist said that Gracelyn has been a very "low maintenance" baby and with the way that she has been breathing on her own and that she should recover quickly. Her oxygen concentration has been 90% today and she got a new IV put into her head. Her little eyes still are closed, she probably just wants all of these things happening her to go away.

The procedure that Gracelyn is receiving has been done here on 4 babies in the last month. Before that it hasn't been done here for six months. So Grace is lucky that the doctors have had "practice" lately. To fix Grace's heart, two lines have to be put in an artery in her little leg and fed up to the heart valve that is fused closed. One will go below the valve, and one will come from above. The one that is above will be put against the valve. It has a metal piece on the end of it that can be heated quickly, similar to a microwave. They will push the hot piece through to make a hole in the valve. Next, the one that is coming from below will be inserted into the hole. It is a balloon. They will then inflate the balloon and basically tear the valve open, and theoretically it should tear where the heart valve flaps should be. If Grace is doing well, she won't have to be intubated (have a breathing tube put down her throat) when she comes out. Possibly Monday, she will also be able to come off the prostaglandin medication that makes her feel like she has the flu all the time.

Gracelyn is a beautiful baby girl. She has done very well so far and we hope that all can continue to go well. Thanks to everyone for your thoughts and prayers in behalf of the family.

Aunt Camee
(Andee's sister)

Christmas Tree at Primary's


This Christmas tree sits on the fourth floor at Primary Children's. I love it!

Old habits die hard...

I had a great night sleep last night. 9 hours STRAIGHT! I suppose that is to be expected after giving birth. I woke up feeling amazing. I told the nurses I was ready to be released. However, tonight was back to normal. Since my baby was diagnosed with a CHD in August I have spent a lot of time alone at night. I needed time to cry and grieve and didn't want to do this in front of Jeff or Mr. C. I spent a lot of time during the night trying to educate my self about her heart and it's defect and learning what it would be like to be a heart mom with a heart baby. Tonight I woke up at 3:00am and began to stress about life again and how this has all finally become a reality and couldn't sleep. Old habits die hard I guess. I decided to walk over to see my baby girl. Jeff was gone. I had already gotten up to pump and he usually is right by my side when I am done, washing the bottles and taking the milk to the nurses, but tonight he didn't move. He needed the sleep. I knew I was safe to leave without waking him up, but left a note just in case and also told the nurse where I was if he woke up. I was a little nervous to go alone, but made the ten minute walk just fine. As I sat by my baby's side I found myself thanking Heavenly Father for the problems that she has instead of pleading with him to fix them. It surprised me as I realized what I was doing. In that room we are surround by tiny babies, 2 and 3 pounds. Some that have no chance at any life. Some that are only a couple pounds with their bodies already covered in incisions. The little guy next to us, Austin, has tubes coming out from everywhere. As you listen to the nurses and doctors you can hear that nothing about him works properly. There next to him lies my perfect beautiful baby with only a broken heart. A broken heart that can eventually be fixed. I am so grateful that we have been only been given what we have. We have a beautiful baby girl that will be home with us before we know. We don't know now whether these trials be for her good or ours, but feel grateful that they are all that we have been given. We both pray that we may learn what we are supposed to and do as Heavenly Father wants us to. We both know that whatever happens is for our good and that now that she has come to this earth and received her body that whether is be now or in the next life we WILL get to raise this beautiful baby. We are so happy to have her in our lives!

Thursday, December 17, 2009

End of day 2...

We are so excited to post pictures of Gracelyn oxygen free. When went down this evening they had taken her oxygen off. She has gone all day with her oxygen in the low 90's on her own and so they finally took it off.
Although she was taken off the oxygen ,today has been a bit of a struggle for our sweet girl. She has been quite uncomfortable. We did, however, end the day with her more calm and with more visitors. Grandpa, Grandma and Camee brought Cole down to visit again. Like it should be, Grandpas and Grandmas are special here. With the permission of the parents, grandparents are the only ones besides parents that can hold the babies. My parents were both able to hold her for the first time tonight. Like he did with Cole, grandpa is already saying, "Grandpa, grandpa, grandpa." Trying to get it to be her first word.
Aunts Camee, Tara and Val were also able to visit.
I wish they could all hold and love her like we've been able to. It is so comforting to have her in your arms. I felt much better after I was given the chance to hold her tight and love her instead of just looking at her. I was sad to say goodbye to our nurse. She has been amazing. She won't be back until Monday and Gracelyn most likely won't return to that area after surgery. I don't know that she would ever see this, but thank you for taking such great care of our baby girl Chris. We will always be grateful!
Grandma brought her a doll down that says Mommy's blessing on the belly.
We are anxious to get tomorrow here and over with, but both feel very confident that all will be well. We will update as things happen tomorrow. Thank you for all the love and support that has been sent our way. We are very grateful for all the prayers that are being offered in our behalf.